Hello everyone,

I wrote in this forum earlier that my father in law has been diagnosed with oral malignant melanoma of the tongue.He is just in the beginning stages of treatment.Well,yesterday I had to take him to have his peg tube inserted before his sugery on 11/21.They had a very difficult time threading the tube past his tumor and to make a long story short a 15-20 minute procedure wound up being a 10 hour stay in the hospital.

It seems that the reality of what is going to happen to him in the coming weeks and months is beginning to sink in.He has become extremely agitated today.He keeps asking why him,I have no answers for him.I don't think I metioned his age before but, he is 57 years old.The doctors can not give him alot of information because there is only so much they know about this rare cancer.

He is looking to me for answers because he knows all his doctors talk to me.I have told him about every conversation that I have had with them, but he feels that they are blowing his condition out of proportion.I don't feel that they are doing this so, I ask you all how do I deal with this situation?They said they will do all they can for him but they just don't know enough to give dead on probabilities.They all feel that he is in denial.How important is it that he fully understand what his chances are?I don't want to add to his misery and I'm at a loss to try to deal with this.I would appreciate any feed back on any of this.


Also, I would like to hear any experiences with peg tubes.He is still going to eat by mouth until the actual surgery day but cold things seem to hurt him.Did anyone else have this problem?

Patty, please use the search engine on the message board and look for PEG etc. You will find tons of comments and posts about the tube. Same for the odds of survival and why me quesstions. There has been plenty of discussion in the last year on this. The long and short of it all is that the statistics don't mean anything to you (or him), don't pay attention to them. The doctors are not avoiding answering the question about probabilities, there is no answer that is the right one for any given person, so they can't tell him anything that is accurate.

Brian,
Thank you for your response.I took your advise and did some searching,you were exactly right I located some great info!I found out from the GI doc today that the reason he is having difficulty with cold liquids is because of the difficult time they had threading the tube.He said he'll be sensitive for a few weeks.They just failed to mention this before he drank a can of ice cold "Boost".I also touched base with his medical oncologist today,we had a discussion in regard to probabilities.It seems that his cancer is so rare that they don't have enough clinical data to give any informed answers.The fact they know so little frightens me .I have spent countless hours on the net researching "oral malignant melanoma",there is just not alot out there.So I'm going to be strong for him and we're all going to learn together how to beat this thing!!!

A few other rules for living with the PEG set up. Room temp liquids are the best. Add water to everything. If you put two cans of Boost or Ensure in the bag, add another 50% plain water, or more. Hydration is always an issue, plus it's easier to digest the watered down food supplements. Eat sitting up, don't lay down for about an hour after PEG feeding as it can cause you to become nauseous. If this is a pain in the rear

Hi Patty G.

Brian is so right about the tube, Room temp is the way to go. I don't mix water in my two cans but follow up the injections with a syringe with four injections of gatorade and one injection with clear floradiated water to clear the tube,
My wife and I were shopping one early morning and I had fed myself three cans that morning. When we were in the store I bent over to look at something and the stopper on the peg tube popped open. I didn't realize it for ten seconds until there was one hell of a puddle on the floor and all over my pants and shoes. We had a good laugh over that one. Take care and remember to ask the doctor for a white clip to pinch off the tube below the end, my doctor didn't have one on right away and the end kepy popping open. No problems since. Take Care, Danny

Hello everyone,

Thank you for all your prompt and insightful posts.I have another question for all the members who have had some of their tongue resected and a flap procedure.When were you able to speak again?I have asked his head and neck surgeon countless times and he keeps responding with "We'll have to wait until I see what I'm up againist in surgery".In case any of you are wondering why I am always speaking to the doctors it's because the tumor has grown so large he can't be understood any longer.I've searched the message board and I've been unable to find anything that fits that topic.Thank you all again for all your help.

Hi Patty,

I didn't have a tongue resection but I had a pech flap to rebuild my throat and part of the right side of my mouth. I am 3-1/2 months post surgery and one week post radiation. At first I was almost impossible to understand but my speech is slowly improving. I have trouble with B's and D's
but most people can understand me. I'm working with a speech pathalogist to improve my swallowing and my speech. Every person is different depending on the type of surgery and radiation they receive. I don't believe anyone can give you an exact answer to your question.
Take Care and my best wishes to you and your family!! Dan

Daniel,
Thank you again for your response.I'm very glad to hear that things are improving for you.The plastic surgeons have also said that my father in law will have a "pech flap".I'm sorry if I seem naive to certain issues,we just have so many questions and ALL his doctors seem to have the same mantra "wait until after the surgery".So I'm doing my best trying to educate myself on my own.I've always been a person who has to have every bit of knowledge I can when I'm facing something.The lack of information regarding his cancer frustrates me.So again I'd like to thank you all for your interest.This site has been very helpful to us.

Dear Patty,

There is no such thing as a dumb question. When I was DX I knew nothing about cancer. Thanks to all the supportive members I was educated in a few weeks. Ask any question you want to. This forum
has a pretty tight group of caring people who will offer support an answers as needed.

Your Friend, Dan

Dear Patty,
My husband had stage 2/3 SCC on the right middle side of his tongue. They took a little more than 1/3 and he had a skin graft from his upper leg. He had lymph node dissection on both sides and no cancer was found. As soon as they took out the trach, he could speak fairly clear if he pushed on the trach hole to keep air from escaping. Since he did not have to had radiation, he was talking almost like before within weeks.
You are in my prayers!
Debbie